P3.013: HERO: Helping Eating disorders Resources and Opinions Survey

Background: Eating disorders (EDs) are complex illnesses that require interdisciplinary treatment. However, barriers to care and inequities can prevent patients with EDs from receiving timely, adequate treatment. Thus, this community-engaged project aims to gather insight from patients and their caregivers to inform the development of equitable, inclusive ED care for pediatric and adolescent patients and their families in Central Virginia and surrounding communities.

Methods: Participants were recruited to respond to one of two online surveys named HERO or Helping Eating disorders Resources and Opinions Survey which gathered data about the experiences of patients with a history of an ED. One survey was for patients over 18 years old while the other was adapted for the caregivers of patients under 18 years old. Responses to the surveys were quantitatively analyzed. Participants were recruited through MyChart messages, UVA clinic fliers, and community outreach in Charlottesville, yielding 35 survey responses for adult patients and five responses from caregivers of pediatric and adolescent patients to date.

Results: The overall average age of ED symptom onset was 12.7 years old from the reports of both surveys. Adult patients reported that the average delay between the onset of ED symptoms and seeking treatment was 43.6 months, significantly longer than the average 2.4 months between seeking and receiving care, while this discrepancy was not reported by caregivers of minor patients. When ranking barriers to treatment, 58.8% of the adult patients identified stigma associated with EDs as highly impactful (rating 4 or 5 on a 5-point scale), while inaccessible treatment was ranked most as highly impactful by caregivers of minor patients. Many adult patients reported that their pediatrician/primary care/mental health provider or school systems could have identified the ED, while pediatrician/primary care/mental health provider, school systems, or athletic coaches could have helped prevent it. 80% of caregiver respondents reported that school systems could have helped both identify and prevent their child’s ED. Survey findings directly informed the creation of the Interdisciplinary Clinic for Eating Disorders, a cohesive outpatient program with a clearly defined mission, treatment approach, and admission/discharge criteria. An interdisciplinary intake assessment was developed for newly referred patients, and families have expressed appreciation for the comprehensive evaluations and recommendations. This single-session intervention has significantly reduced patient wait times, improved care coordination, decreased provider burnout, and fostered interprofessional education and team cohesion.

Conclusion: These results suggest that the stigma around EDs, treatment delays, and inaccessibility of treatment highlight critical areas for community-based interventions targeting adolescents. The recurring role of school systems underscores the potential efficacy of implementing community-based programs in schools, as our team has, to address EDs in youth. For future directions, we have begun semi-structured qualitative interviews of patients, allowing us further insight into their experiences.